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Justina Pelliter and Medical Child Abuse

It has been very difficult to sit back and just watch the travesty that is the Justina Pelletier case as it slowly works its way through the juvenile court system and now the press. Of course, nothing can compare to what the family has been going through. And with hopes dashed that the Hon. Joseph Johnston, with whom I had the privilege of working on other Care and Protection cases before he became a jurist, would render a decision yesterday that would allow Justina to leave the godforsaken “Bader 5” psychiatric ward of Boston’s Children’s Hospital, her parents are resigned to spend Christmas without their precious daughter. The case has been continued until January 10, 2014. According to the Boston Globe, The judge appointed a new investigator to gather more current information in the case, presumably in order to assist him in making his ruling. Thus, Justina remains in the custody of the Department of Children and Families at least until mid-January.

Having myself handled a number of these “medical child abuse” cases (physical abuse, shaken baby syndrome, PANDAS and Mitochondria), I know how difficult these cases are, especially for such a thoughtful jurist as I know Judge Johnston to be.

The problem with these cases, of course, is not any one thing, and certainly not the judge. Instead, its much more complicated–the problem is systemic. It’s the way the system is currently designed. The current laws and regulations overwhelmingly favor the government, and specifically the Department of Children and Families, which prosecutes child protection cases, and in medical child abuse cases, the hospitals which report them. For example, even though the burden of proof is always with the state (DCF), my colleagues who regularly try these cases know that in practice, the burden may as well be on the parents. Why? Partly because of the rules of evidence in these cases, what the judge is able to see (DCF reports etc) and how he or she is able to use such evidence (51A’s to “set the stage” and 51B’s as “primary fact” etc.) And also because in child abuse cases the benefit of the doubt almost always goes to DCF and the medical institutions that file the 51A, at least initially (at the 72 Hour Hearing). And that is a huge advantage to DCF, since it can retain custody for a lengthy period of time before a judge actually renders a decision. The ten plus months Justina’s parents have had to wait–surely an eternity to them–is actually on the short side for these types of cases. I’ve seen complicated C&Ps linger for considerably longer before getting a trial. In fact I have several that fit the bill right now…

That said, the Pelletier case and my own “mito” case involving BCH are extremely unsettling and in fact horrifying in an Orwellian sort of way, where Big Brother comes in the form of Children’s “Child Protection Team.” In Justina’s case, Dr. Mark Korson, head of the metabolism department at Tufts Medical Center and a leading mitochondria expert in Boston, referred Justina’s parents to Children’s specifically to see a gastroenterologist who had moved his practice from Tufts to Children’s. And without any warning or ability to stop it, the CPT swooped in with its own team of doctors and takes total control of Justina’s case, including filing a 51A against the parents and locking her in Bader 5, where she remains 10 months later. Worse, the CPT wouldn’t even let Dr. Korson evaluate Justina. Her parents were told to IMMEDIATELY LEAVE THE HOSPITAL WHILE SECURITY GUARDS QUICKLY ASSUMED POSITIONS ON JUSTINA’S FLOOR AND AN AROUND-THE-CLOCK MONITOR TOOK HER PLACE IN OR NEAR JUSTINA’S ROOM. You ask, “How can this happen in America? What happened to the parents’ right to make medical decisions on behalf of their child?” Good questions. Frankly, I would expect this frightening scenario to occur in North Korea or the former Soviet Union, not the United States of America. And please note that this all happened without any meaningful oversight or “check” on Children’s conduct in real time. Instead, the parents were left to defend themselves for months thereafter at considerable financial expense in an egregiously lopsided court system while their daughter’s condition has at best remained the same, or, as some reports suggest, actually gotten worse.

When I appeared on Glenn Beck’s internet tv show this past Tuesday, just before he had to go to a “hard break” and end the interview, he said the courts were supposed to serve as the “check” in these cases but that the court system “was broken.” He’s got a point, but I might re-word that sentiment a little. Instead, I would suggest that our system is in need of some significant re-calibrating, and that parents could use a few more tools in their arsenal. The fact is, if you as the parent find yourself in court staring down DCF and Children’s Hospital at a “72 Hour” custody hearing–where the burden of proof is the relatively low “preponderance of the evidence” standard (in Massachusetts, anyway)–you probably already lost, at least the first round of the battle. And that is simply because most judges at this stage are more likely to give DCF (and a BCH) the benefit of the doubt. And such rulings of temporary custody to DCF are usually amply supported by the evidence at such an early stage.

What I wanted to say to Glenn Beck is that way before parents find themselves in court, there should be something in place at the hospital–a referee of some sort, like an Ombudsman’s office that DCF has, with a right of review and/or administrative appeal–that can serve as a “check” on the Child Protection Team before it is allowed to file a 51A in a case where experts may disagree over a diagnosis. Why? Simply because, in many cases, once DCF gets involved, it’s already too late…the damage has already been done. Think about it…in the case of a medical disagreement, all it takes is one doctor to contact CPT and another call by the CPT to DCF to unleash the awesome power of the state. How is that fair? (Allow me to digress for a moment…as I am thinking about another situation, I am not sure what troubles me more–that the CPT was allowed to monitor the on-line activities of parents who no longer had any affiliation with Children’s, as it did in one of my cases, or that it chose to spend its time that way. Sadly, I think that while it surely started over the past 40 years with the best of intentions, the CPT has suffered from so much “mission creep” that it remains a scary shadow of its former self.)

In an effort to hopefully advance the discussion, I ask the following questions: Why does the Child Protection Team get to decide that a child is at severe and immediate risk of “medical child abuse” or that the child’s symptoms are psychiatric in nature AND ARE FURTHER ALLOWED TO COMPLETELY IGNORE OR DISCOUNT OTHER MEDICAL EXPERTS WHO HAVE ALREADY CONCLUDED THAT THE CHILD’S ILLNESS IS MEDICAL, such was the case in Justina’s situation and in two cases I handled, including the “mito” case of Jessica Hilliard, who appeared with me this week on Fox 8 and Fox 25? Because they are, after all, the “Child Protection Team” and thus know more than everybody else? Really? Because they are “mandated reporters” and thus “because they can?” (with little or no consequence.) Why does the CPT refuse to allow specialists outside of the hospital to evaluate a child –and in some cases, shove aside some of their own doctors? Why does it get to decide that a parent is not allowed to get a second opinion? And if the CPT thinks a child is being “medically” abused by their parents, what were the other renowned specialists doing? Are they complicit in medical child abuse? Are they simply being manipulated by the parents, as was the accusation in my cases? Really? Then how does it explain the cases in which there is vigorous disagreement amongst BCH’s doctors too? What about the cases in which Children’s actually diagnosed a child with mitochondrial disease and later revokes the diagnosis after (or just before) the CPT gets involved, as also happened in my mito case? Are the doctors at Children’s being bamboozled by pushy parents, many of whom are, after all, highly educated and articulate, too? What is the motivation of the doctors to “mis-diagnose” a child with a medical condition, such as mitochondria or PANDAS? To harm their patient? To advance their career or a relatively new and still somewhat controversial diagnosis? What awesome and absolutely unfettered power this Child Protection team has! And, if you think the Department of Children and Families is an impartial “referee” set up to adequately investigate these medical child abuse cases, I have a bridge to sell you.

(As an aside, to illustrate just how the sands can shift underneath the CPT’s lofty perch in these “medical child abuse cases,” Massachusetts General Hospital just recently opened a PANDAS clinic, despite the fact that just a year ago the CPT and certain doctors at Children’s insisted that PANDAS was a phony diagnosis and my clients were medically abusing their daughter.)

As the Boston Globe’s very thorough investigative reporter, Neil Swidey, and The Blaze’s Liz Klimas reported extensively in the past two weeks DCF simply doesn’t have the resources to effectively handle these complicated medical cases. They don’t have adequate, paid medical staff for thorough case reviews and often ask Boston Children’s Hospital’s doctors and psychiatrists to perform free consultations. Furthermore, what hasn’t been said yet is another painful truth: While we are all familiar with the criminal standard of “beyond a reasonable doubt,” which is the highest burden of proof required in our jurisprudence, all DCF needs to support a 51A is “reasonable belief,” which hovers in the realm of “reasonable cause.” It is in fact lower than “probable cause,” which the police need to charge someone with a crime and is, along with “reasonable suspicion,” what is needed to lawfully demand that someone exit a car. All to say that…it takes very little to support a 51A, and when the accusation is medical child abuse filed by the Child Protection Team–the so-called “child abuse” experts…get yourself ready to be placed on their Central Registry as the perpetrator of child abuse.

I would be remiss in saying that occasionally, DCF actually does the right thing, as was the case during Jessica Hilliard’s investigation. We were quite fortunate to get a very seasoned investigator who had considerable experience handling complex medical cases and after an exhaustive review of the allegations and after turning over every stone to get all of the relevant information available…he UNSUPPORTED the 51A…in a case that was eerily similar to the Pelletier Case and could have easily been its predecessor. He remains one of the best social workers I have every confronted. (Of course, I certainly don’t think it hurt her to have legal representation either, particularly someone who has experience with complex DCF cases. Whether that person be me or someone else…the fact is, parents are taken more seriously by DCF when they are adequately represented. Also, effective advocacy can steer the case in the right direction at the very beginning of the investigation, which often makes a huge difference.) The most disturbing thing about Jessica’s case, however, occurred after DCF closed its case and after she moved all of her child’s care to Tufts. Astonishingly, Children’s Child’s Protection Team wouldn’t let the matter go…it called Tuft’s version of the CPT and tried to “warn” them that the parent’s were seeking unnecessary medical treatment for their child. Thankfully, the same DCF investigator found the parents had done nothing wrong.)

So…something needs to change. The CPT can’t simply be allowed to wield this much power without oversight and continue to destroy or at least cause substantial harm to families in the name of “saving” children. Experts should be allowed to agree to disagree–it’s the American Way–as they tend to do in emerging medical fields, and the CPT should not be allowed to take sides, ignore countervailing medical authority, blame parents for “medical child abuse” and use the government to advance their own agenda, which, of course, remains a mystery.

Let’s hope the spotlight that has been put on this case and this very disturbing trend yield’s some fruit soon. Until then, parents who find themselves being accused of “medical child abuse” need to act swiftly and assemble a team that has the chops to go up against a system that is badly in need of some fine-tuning.